7 days ago i had my takedown surgery down and would like to know how long should I expect Butt Burn. Does it go down after few months once you have introduced regular fiber foods .
245 Responses
I agree with what RyanM has said, Meta is a maintenance method to reduce acid and to "help" gain a cleaner movement. I really don't think it will reduce the number of movements significantly for the majority of people. The Bidet or the warm shower should be used more frequently than any other aforementioned activity, it helps SO MUCH more.
In fact, it is only with a warm rinse regiment was I able to go back to ALL of the foods I enjoyed pre UC. I avoid no foods unless if the rinse is not available to me. I don't rinse every time, but your butt will tell you when one is needed. Sometimes the butt wants a warm rinse for even the most benign food too!
I so agree. Everyone will have their own experiences while adjusting but there are some very basic agreed upon items such as warm rinses, bidets, metamusil (which I can NOT ...grrrrr...get here), psyllium (ordering on-line for me) etc etc
...and yet, we are oh so careful, nothing should go wrong, perfect day of doing all the right things, ticking the regimen boxes and you will still find for some unknown reason; which even a crystal ball wouldn't help with; that you'll perch on the porcelain trying to turn your innards, outwards....*sigh*....
.......Best thing to do when this happens...seriously, stand on the scales, look at your weight and go woooo-hoooooo!!.... as you'll never feel any lighter or have the evidence telling you that a kilo has just up and disappeared....
I agree with what RyanM has said, Meta is a maintenance method to reduce acid and to "help" gain a cleaner movement. I really don't think it will reduce the number of movements significantly for the majority of people. The Bidet or the warm shower should be used more frequently than any other aforementioned activity, it helps SO MUCH more.
In fact, it is only with a warm rinse regiment was I able to go back to ALL of the foods I enjoyed pre UC. I avoid no foods unless if the rinse is not available to me. I don't rinse every time, but your butt will tell you when one is needed. Sometimes the butt wants a warm rinse for even the most benign food too!
If you can't find Metamucil, try psyllium husk....it's also much more economical. I also eat a great deal of rolled oats in home made muesli which I make gluten free and without any sugar added or even just porridge from instant oats helps to bind the stool as it goes through the ilium. It will also bind the excess water and acid too.
There have been some good surveys over the last week or so that had some excellent advice on various matters such as pouchitus, reducing BM's, using pain killers, antibiotics etc etc.
One thing I have just started to do in the last week, is make notations in doctors.com on various medications mentioned throughout this forum. You can add your own notes and it also gives you a good comprehensive rundown on pros & cons of the various medications.
It'll get better but don't expect instant miracles, your body has to adjust to managing with the new system installed.....
I cant believe no one is mentioning metamucil. This has been the biggest assist with acid at passing. Take this with every meal. My nurse in hospital post surgery said it would be my best friend. She was not kidding. Try to reduce acid in the system. Things like baking soda in water and peptobismol are also very helpful. Then follow up with a Toto bidet (there are other brands) to keep things clean at passing and life will be a whole lot better.
Most of the time I go in the shower and rinse with the hand held. I even carry my hand held on the road with me and install in showers if I am going to be there more than one night. For me, wipes, creams and diets are just good maintenance activities but will never "fix" 6-10 BMs a day. A good hot/warm rinse repairs/cleans alot of pooping abuse.
I agree and I always use a bidet hose. These are an attachment that screws onto the inlet hose on the cistern and are absolutely brilliant. Google the term "bidet hose" and you'll see images and understand why many expats in Asia call them bumguns.... Saves having to get into the shower to clean up and saves a great deal of time and paper.
NMGuy...I just read your comment further up and understand absolutely about the chilled effect on sensitive areas after I visited my sister. Depending on the house, it could be a huge job to plumb in hot water.
You can order Calmoseptine on Amazon.... I also use a "portable hand held bidet" which helps greatly!!! You can use it anywhere, anytime. It was recommended at my j pouch support group and was the best recommendation! Check them out on Amazon as well.
Looks like there's lot's of comments here with so many others personal experiences, when I had my j-pouch surgery the doc was very old school (but brilliant) with giving answers on what his other patients did (what worked & what didn't) after their surgeries, and many of my concerns were only addressed during follow-up appointments, now you have a great sounding board and so many answers all right here at this site. Amazing!
I agree with Ang35 regarding sitz baths and the bodies natural ability for toughening up the skin with time. I thought my Doc was crazy when he told my husband for the 1st few weeks at home he wanted the area from the bed to the bathroom covered with plastic and Under Pads (Peck Pads) on the bed and absolutely 'No Diapers'! The plastic was on for floor for safety, but this was done with teaching me to use my own muscles (Kegels) for control, an to make the distance to the bathroom. The Surgeon also wanted my bottom to be bare as many hours as possible so the natural air could help with the healing process (yikes); this was done usually when the Family was away at school, work & play. Like I said, very old school, but he was one of the original pioneers with this surgery. And look how far we've come with this surgery. At the beginning my days & nights were long and frustrating, but your body adapts, and now it's been decades and this resource is a blessing.
Creams are used in severe inflammation and open sores, used for a road trip when your hand held shower is not available. Constant use of shower WILL repair your butt to normal and keep the itch/burn away. Good TP and wipes are also OK but will not stave off for ever the eventual burn/itch if you have around 8-12 movements. When at home and lazy, I use a soft TP followed by a good baby soft baby wipe. Most of the time I go in the shower and rinse with the hand held. I even carry my hand held on the road with me and install in showers if I am going to be there more than one night. For me, wipes, creams and diets are just good maintenance activities but will never "fix" 6-10 BMs a day. A good hot/warm rinse repairs/cleans alot of pooping abuse.
Regarding the bidet. In Asia, there is what is known as the Hose Bidet or "bum gun". It screws onto the inlet valve where water is directed to the tank for flushing. You need to fit a T piece on the inlet so the hose can be attached. At the other end you can have a pistol like control for stopping and starting the flow and adjusting the pressure. I swear by mine and they are just amazing. Type BIDET HOSE into Google and you'll see this simple, cheap and amazing device.
I also wrote at length of skin protection in the survey on incontinence. Below is the link to the post but there were several other posts in this survey that made some amazing comments...Particularly the on on the sacral nerve stimulater.
If your stool is very liquid you need to use a cream and clean yourself really well after each BM. No spicy food. No fiber. For the first year I tried not to eat fruits, vegetables, salad, too much sugar, too much greasy food etc... With time it will get better.
I experienced severe butt burn in the first couple of weeks after takedown. I thought it would never go away and sat in a tub for hours about 2 days after as it was the only thing that would soothe it, it was unbearable. After the "bath" day I started to use a sitz bath after bowel movements or used a cleansing bottle with warm water in it, over the area. My doctor said that my skin would toughen up but I didn't believe him as it was sooo bad. Turns out he was right and about 3 weeks later ( i can't exactly remember as it was a few years ago) it got better and didn't feel the burn anymore. I used the cleansing bottle with warm water for 2 years after takedown for cleanliness after each bowel movement and used a barrier cream I got from the hospital made by Coloplast, it worked wonders for keeping any rash away. Now 3 years later I never have butt burn as severe as what I experienced in the beginning nor do I need cream on a regular basis. It will get better soon
Calmoseptine works instantly and has been the only thing for me that worked! I Have gifted it many times to fellow pouchers---many now swear by it too. Hope you get relief soon!
Yes, lots of foods are a no no for me. Anything no cooked. Carrots are the worst. Cannot eat nuts or corn. Salad is bad too. You'll see as you go along. Meat mash potatoes, very well cooked veggies are you best friends. No spicy food. And when food gets "blocked" in my opening, I use a catheter to take it out. Pieces of raw food are bad, be careful And wash or use wipes EVERY time you go for a BM.
Balmex works the best for me. I have had my j pouch and itch since 1995. Probiotics do not agree with me. I definitely agree that TP has some negative effect.
It took me 14 months to recover from the worst of it, which was right after surgery. I still get what I call "busy butt" if I eat too many peanuts, or any high iron food, iron supplements, basil, or super spicy food. I use Konsyl powder, Anusol 2.5%, Calmoseptine and Tylenol 4 when it's bad. You'll figure out over time if you have any bad foodd.
The solution is to use wet wipes every time. Even when you're out. Bring some with you. I can't take probiotic, makes me sick. Toilet paper is your enemy when you go to the bathroom often and you have soft stool.
I find the best thing is to regularly wash up with warm water and an organic non abrasive soap. Especially in the morning after you eat breakfast and get everything out from the day before. Also every morning I eat plain oatmeal mixed with Metamucil powder. That meal usually stays in my system for 5 hours before having a bowel movement. And oatmeal Metamucil combo gives me extremely solid formed bowel movements.
My doctor wrote a script for VSL#3 but my insurance will not pay for it. I still buy it because it's worth it. An FYI.....Taking too much is not always good; I OD on probiotics in the Spring (exceed doctors dosage thinking more the better). Symptoms were racing heart at rest and excessive gas. Did a heart monitor, scan & tread mill everything was great. Happened to go online to look up side effects of taking too many probiotics, my symptoms matched. Lowered my dosage to one in the morning an one at night, symptoms went away. With a Jpouch the excessive gas was causing a real issue.
Insurance will most likely pay for VSL probiotic if your dr writes a script for it. My takedown was in 2005 and I remember it being about a month before my skin started to adjust. I've found a good over the counter cream is Triple Paste for diaper rash. Very thick, lasts a long time and it doesn't burn. Also second what others have said about diet. Find out what works for you. It will take time and everyone is different. For me, a low carb (ketatonic) diet has done wonders, especially for my pouchitis.
Insurance will most likely pay for VSL probiotic if your dr writes a script for it. My takedown was in 2005 and I remember it being about a month before my skin started to adjust. I've found a good over the counter cream is Triple Paste for diaper rash. Very thick, lasts a long time and it doesn't burn. Also second what others have said about diet. Find out what works for you. It will take time and everyone is different. For me, a low carb (ketatonic) diet has done wonders, especially for my pouchitis.
Use a strong probiotic (I use VSL #3 - not prescription but your pharmacy will need to order it) and use baby wipes every time. I have had only 1 incident in 24 years and don't have to worry about avoiding foods (even spicy) or using creams, or pouchitis.
I had J pouch surgery 33 years ago and I use to use Bag Balm to sooth my backside after numerous explosive BM's. After 25 years a GI doc at a Texas teaching hospital said they recommend a probiotic to their patients to help with BM problems. I take 2 capsules of PB 8 Acidophilus 2 X's a day. Vitacost sells it for about $9 for 120 capsules. More expensive brands may work better, but I have never tried them because of cost and PB 8 worked for me.
Installing a bidet on my toilets and travelling with a travel bidet and wet wipes has saved my butt. I also agree with everyone on the use of calmoseptine and avoiding spicy foods.
Everyone has said it all, but to add to what's been said, spicy food, even a few drops of Tabasco sauce on my food can always be felt on the other end even 9 years after takedown.
The key is finding the foods your system will tolerate. I generally don't tolerate a lot of dairy products so I shy away from them, or have them in low amounts. However, lately I have been eating a cup of 4% cottage cheese with lunch everyday and have not been on probiotics for about 4 months. Every once in awhile will get a loose stool, but a couple of loperamide help. Activia is a good probiotic, however I bought the Sams Club knock off, same ingrediants and about 50% cheaper. Had my take down in 2006 and battled pouchitis a lot. Now I am at the point I can feel it coming on and hit it fast with about 4 days of Flagyl and knock it down. Happens about every 4-5 months, so Doc is good about making sure I have enough on hand to get it under control fast.
My solution to that is baby wipes. Since I've been using them all the time my butt doesn't burn or hitch anymore ever. Because or BM is pretty liquid it gets everywhere and they only way to really take it all off is with a wet baby wipe (or cloth). Once you do that every time you go to the toilet it won't hurt or hitch anymore ever. If you have bleeding or the anus or sores, then use a BM catheter, this way you give a break to your anus. That is been working for me for the past 8 years. There is also a cream with 1% dibucaine that freezes the skin and it helps also. Good luck
A very good cream is Calmoseptine. This is an over the counter cream which is available a many pharmacies. While this over the counter, it is usually stored behind the counter. I have gotten this cream at WalMart and they usually have to order it. You can also order directly from the manufacturer too - http://www.calmoseptineointment.com/
Try a very strong probiotic every day - 70 billion live bacteria...this will help tremendously. Also avoid nuts or eat them in very small amounts to start.
My husband had his surgery 4 years ago and has gradually identified the foods that give him butt burn - track your diet and eliminate any foods that are especially bad and gradually add them back in one at a time. He has to avoid dairy and sugar. In the beginning he had to avoid gluten as well but has gradually been able to have some bread products - I make bread for him with organic ingredients. Good luck...
I have had a problem with butt burn including some open rash since my takedown in October 2012. I have tried the expensive creams and nothing seems to work. The best cure or fix that I have found is a low acid diet. I also suffer from pouchitis and psoriasis so they are probably contributors. I just make sure that I keep myself clean after a bowl movement.
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